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The Last Thousand Words

clip_image002This guest post is written by Rusty Greene, RN, a student in the doctor of nursing practice program at the Hunter–Bellevue School of Nursing in New York City. He was a student last spring in CHMP senior fellow Joy Jacobson’s narrative writing class for graduate nursing students. Names have been changed in this post to protect anonymity.

Two years ago, I got a tattoo. I never thought it would help someone die.

My right upper arm is covered with a sketch of a seahorse. My uncle and my grandfather have the same tattoo. Both of them were in the navy. They got the tattoo because the seahorse symbolized strength and determination.

I got mine for different reasons. When I was at an aquarium several years ago, I saw the seahorses. They are strange creatures indeed. The males give birth and they are coated in a crusty layer of bone. The wings on their backs flicker like tiny prehistoric appendages. After the fathers give birth, they care for a brood of over 1,000, knowing that more than 950 of them won’t survive.

Seahorses are rugged and resilient. But they also bend the rules of gender. They turn the concept of caring on its head. The concept of “nursing” is not particular to the female of the species.

This is something I understand because I’m a male nurse.

In nursing school, I took many courses on compassion, the empathic response, and palliative care. While I believe anyone is capable of mastering these skills, the tone of these subjects often takes a female perspective. This is particularly true when discussing burnout and fatigue. In fact, the concept of compassion fatigue has been bandied about over the past few years as a very real and uncomfortable condition for nurses and caregivers in general. It is often discussed in the context of having a healthy work/life balance, where a nurse must juggle the demands of caring for strangers only to go home and tend to children, a husband. and a mortgage.

Additionally, when discussing care of the dying, medical literature sometimes goes to the other extreme, providing a sometimes cold and cookie-cutter set of guidelines to help patients “pass.” An Internet search will give you several examples. To combat the sterile nature of these reports, some will say that it is okay to cry with your patients and hold their hand when they are dying. I had a professor in nursing school who said she even climbed into bed with a patient and held her as she died of breast cancer. To me, that seems like a bit too much.

So the messages are mixed. Have compassion but don’t deplete yourself. Follow best practices but tailor them to your own nursing style. Have a big heart but be a man. More often than not, these messages remain muddled. But sometimes, circumstances can create the perfect moment of clarity.

It was Saturday night and Alex was dying of AIDS.

I remember walking in to bathe him near the end of my shift. I entered his room with a basin full of warm water and some liquid soap. As is almost always the case with those who are dying, the room was preternaturally still, as if the air was waiting for the event common to us all but rare in its profundity. Alex was moving on, expiring, “going to the next life.” All of us only get to do it once and it is a singular experience. The atmosphere seems to know this.

I pulled back Alex’s sheets to reveal his frail and failing body. From feet to neck, he was covered in tattoos. They were intricate, colorful designs that swirled on his flesh, dancing this way and that. Then I looked into Alex’s eyes and I saw terror. His “moving on” wasn’t going to be easy. And I had to find a way to comfort him.

I showed him my tattoo and explained its significance. He smiled as best he could and said, “Nice.”

As I was washing his leg, I tentatively asked him about a palm tree and some goldfish drawn on his knee. He explained as best he could about getting that particular tattoo in Florida when he was on vacation with an ex-girlfriend. And at that moment, I saw something soften in his eyes. He went on to describe several more images on his body. A series of stars drawn in Amsterdam on his right shoulder. A black butterfly on his left pectoral muscle that he called “Dark Hope.” The more he shared, the more he relaxed. “Have a good night,” I said softly when I was finished.

“You too,” he said.

Alex died the next day.

Somewhere in between the lectures, the textbooks and the life experience, a space for healing was created. There were no tears. There were no hugs. It was just two guys talking about their tattoos. But it was deeply emotional. I didn’t feel exhausted or distraught or less of a man for caring very deeply about my patient. And Alex finally got some rest.

They say a picture is worth a thousand words. That night they were worth far more than that.

What Would #ThisNurse Say? #NYT, We Are Not Just, “Some Nurses.”

This post is by CHMP’s graduate fellow, Amanda Anderson, RN.  Amanda is a practicing bedside nurse in Manhattan, and a grad student at the Hunter-Bellevue School of Nursing, where she co-directs The Nurses Writing Project. Her personal site, This Nurse Wonders, hosts all of her writing, and she tweets @12hourRNstreet_ghosts

I gotta say it: I really didn’t want to write about Ebola again. I really did search for an alternative topic, but it’s clear from the media frenzy of the past week’s events – an infected doctor gallivanting around New York City, followed by an Ebola-free nurse-turned political prisoner – that nursing voice on this topic is still direly needed, and still sadly missing.

While nurse-centric reporting has picked up in other media outlets, the Times has largely stuck to its age-old beat – nurses are nameless, unauthorized to speak, and not worth quoting. Perhaps the piece that makes this most evident this week, is Anemona Hartocollis and Nate Schweber’s account of the stigma that the employee’s of New York City’s Bellevue Hospital face while currently treating Ebola. Honestly, after “Bellevue Employees Face Ebola at Work, and Stigma of It Everywhere,” I’ve toyed with the idea of cancelling my subscription and switching to the Post, because it really doesn’t read much different.

I’m sad, and a little flabbergasted by this piece. It speaks of stigmas Bellevue workers are facing since Ebola came to town  – an important topic, and a perfect opportunity for nurse input. While I am sure that the burden of high profile care for Dr. Spencer and a condition as dangerous and unfamiliar as Ebola, is stressful and emotionally taxing, this article does little to break down the stigma that it speaks of. In contrast to Emory Health’s full disclosure of care protocols, this is wasteful public relations fluff. Where expert nurse opinion may have offered salve to the burns of misinformation, this collection of random quotes from titled physicians and food cart workers instead fanned its flame.

While any number of nurses could have commented in a way that discredited the reported stigma, not one was named or quoted. Instead of an infection control nurse talking about the procedures employees follow when entering and exiting the hospital (do they shower after work at Bellevue, as they do at Emory?), or the Chief Nursing Officer speaking about the counseling and supportive practices given to nurses caring for patients, nurses were referred to en masse as, “some nurses,” or “workers.” Instead of a union steward discussing the bargaining that is likely taking place to ensure that Bellevue nurses are adequately trained and units safely staffed throughout the care of this patient, nurses filed rank with the unskilled, unnamed and unauthorized – silently embracing the stigma, perhaps.

Bellevue Sources

Sources, as listed by NYT reporters Anemona Harticollis and Nate Schweber, in their article, “Bellevue Employees Face Ebola At Work, and Stigma of It Everywhere,” from October 29, 2014.

The message behind this article is clear, through the language of speech that surrounds each person interviewed – nurses are not important enough to be identified, to be trained to speak openly to the media, or to be titled. While the man who sells coffee on the street shares his name and opinion, the expert, educated nurses within the hospital are shushed. Perhaps the contrast between those allowed to speak and those quoted in anonymity exposes a larger truth: Unless we are at a staged press conference, or whistle blowing with a lawyer, nurses are to remain the quiet ghosts of healthcare.

What would this nurse say, as my pithy title so blaringly asks? I’d say, nurses, start asking why the authors of an article in The New York Times can get away with quoting and titling the man who pushes patients down the hall, but you, the educated, credentialed professional are not sought after.  I’d say, prepare yourself to speak to these reporters; start by reading your employer’s media policy, and asking your public relations department for nurse-specific media training. Remind them of your worth as an expert whose voice of experience is vital in current conversation. Tell them that with one sentence, a well-spoken nurse might have changed the course of this article from tabloid fodder, to a positive and effective public information piece: Ebola care is challenging, but because we are trained in x, y, z, and because we want to see our patient, and our community remain healthy, we push through with vigilance and skill.

Without our names, our titles or our words, we will continue as, “…some nurses,” allowing those without our expertise to speak for us, and own our care.

Invisible Again

invisible nurse

What’s wrong with this media advisory:

______________________________________________________________________

MEDIA ADVISORY
NIH MEDIA BRIEFING ON DISCHARGE OF EBOLA PATIENT FROM ITS CLINICAL CENTER SPECIAL CLINICAL STUDIES UNIT

WHAT
NIH officials will brief reporters about the discharge of Nina Pham, the Dallas nurse who was admitted to the NIH Clinical Center on October 16 with Ebola virus disease, and is now virus free.

WHO
— Francis S. Collins, M.D., Ph.D., Director of the National Institutes of Health
— Anthony S. Fauci, M.D., Ph.D., Director of the National Institute of Allergy and Infectious Diseases
— H. Clifford (Cliff) Lane, M.D., NIAID Clinical Director
— John I. Gallin, M.D., Director, NIH Clinical Center
— Tara Palmore, M.D., Director, Hospital Epidemiologist, NIH Clinical Center and Director, Infectious Diseases Training Program, NIAID
— Rick Davey, M.D., Deputy Clinical Director, NIAID Division of Clinical Research

___________________________________________________________________________

Once again, nurses are missing from media stories on Ebola. Why would the NIH clinical center not include at least the chief nurse for the clinical center to talk about the care that Nina Pham received?

We’re back to pre-Nina Pham days.

When nurse Nina Phan was diagnosed with Ebola, journalists were on the hunt for nurses who could be interviewed. While National Nurses United was proactive with reaching out to media, other journalists turned to nurses such as Karen Cox, Secretary of the American Academy of Nursing and COO of Mercy Children’s Hospital in Kansas City; Pamela Cipriano, president of the American Nurses Association;  and Elaine Larsen, international expert in infectious disease and professor of nursing at Columbia University. As president of the American Academy of Nursing, I was fielding multiple media requests, providing commentary on the situation and referring journalists to experts such as Cox and Larsen.

It was a ‘media frenzy’, as many called it. For nurses, it was heartening to see the attention to the daily, heroic work of many nurses and to see nurses as spokespeople in the media. But once Nina Pham was declared Ebola-free, the calls stopped. Now it’s all physicians and politicians all the time.

Of course, the exception is Kaci Hickox, the nurse who is being quarantined outside of University Hospital in Newark, NJ, after returning from Liberia where she cared for patients with Ebola. She is sympom-free and, probably Ebola-free; and, thus, not able to transmit the virus. Despite this, Governors Andrew Cuomo and Chris Christie have set policies in their states that require aid workers and other travelers from West Africa who had contact with Ebola patients to be quarantined for 21 days. This is not a house-quarantine with self-monitoring.

On CNN Sunday morning in an interview with Candy Crowley, Hickox refused to agree that the policies were reasonable. Instead, she argued that the policies do not reflect the available evidence. Indeed, as another CNN reporter pointed out, the nurses and other health care workers who are taking care of patients with active Ebola in Bellevue Hospital, demonstrating how poorly thought out the policy is. Hickox was informed, smart, and fiesty. She stood her ground and clearly articulated her reasons for opposing the new quarantine policy.

Once Hickox is able to go home, will there be any nurses’ voices in the media’s discussion of the nation’s response to Ebola and other infectious diseases? Will nurses be sought routinely by journalists as experts on health and health care issues? Will their different and important perspectives on these matters be sought?

Or will we once again be invisible?

Diana J. Mason, PhD, RN, FAAN, Rubin Professor of Nursing

What Would #ThisNurse Say? Risky Business: Unilateral DNR by Diagnosis

This post is by CHMP’s graduate fellow, Amanda Anderson, RN. Amanda is a practicing bedside nurse in Manhattan, and a student in the Hunter-Bellevue School of Nursing‘s dual MSN/MPA program with Baruch College. At HBSON, she co-directs The Nurses Writing Project, a nurse-specific writing program that uses peer-based collaborative writing assistance and reflective writing practices to grow nurse leadership via the written word. She blogs here, and for a number of other nursing sites. Find her clips via her blog, This Nurse Wonders. She tweets @12hourRNOpened First Aid Kit.JPGShe was gone, and we knew it. Her heart was just too sick and just too tired to benefit from the chest compressions we had started moments ago. We knew the code would bring only trauma to her failing body, but she was so young, and we had already done so much, and this is what she wanted.  Besides, we loved her.

With code bell blaring, our attending for the night – young, too, but healthy – ran to the head of the bed to intubate. Shaking hands barely wrapped in the first gloves she could find, she pried open her blood-filled mouth. We tried to clear this blood that poured – blood full of disease and fear, blood accidentally infected at birth.

Thumping, splashing, yelling – the violence of the code sent red waves of grief over us as we worked. Somehow, someone tied masks on our faces long after our grim care began – we spent no moments thinking of risk, speeding forward for the life we so desperately wanted to save.

In health care, whether we love our patients or not, we daily risk our health on their behalf. We risk needle sticks, violence, and the impervious chance of infectious spread. Ebola brought this risk into the view of American media, but its spotlight simply illuminates the daily chances we take to care under the shadow of HIV, Hepatitis or even pneumonia. The American Nurses Association, and state boards of nursing, clearly state that our ethical duty as nurses comes irrespective to patient diagnosis. Besides, I don’t know a single provider that would sit back or deny care to a patient in life-saving need.

But in a strange little article, tucked deep within the New York Times Tuesday Science section this week, Lawrence K. Altman writes of a New York City bioethicist’s industry-wide call to withhold cardiopulmonary resuscitation (CPR)  and resuscitative care, to those diagnosed with Ebola. The week’s Ebola news lessened since the prior’s media frenzy, but this piece – viewed against the backdrop of the Dallas transmissions, a persistently raging epidemic in Africa, and CDC squabbles – snuck in as a puzzling commentary, one that should not sit void of nursing voice.

Altman discusses the statement bioethicist, Dr. Joseph J. Fins, of New York Presbyterian Hospital Weill-Cornell, made on the Hastings Center’s website last week. According to Fins, Ebola poses far too much risk for health care providers performing CPR, and because of the extensive PPE application required, patients requiring CPR may suffer extensive brain damage by the time providers are prepared to initiate it. Considering this, Fins states, “Unilateral do-not-resuscitate orders would seem justifiable under these circumstances, if surrogates do not otherwise agree to a DNR order.” While the article and bioethicist argument expose a gap in current medical conversation about Ebola treatment in light of resuscitation, neither makes efforts to consider the personal experience of providers – particularly nurses – instructed to withhold potentially life-saving care.

A nurse’s voice is vital here. As we saw through the infected nurses in Dallas, and through the subsequent media debate about Ebola care and PPE needs, nurses are in the forefront of care – and should likewise be in the forefront of policy creation. In my opinion, there are two important missed opportunities for nurse voice in this article – a discussion of the very frequent nature of risky, and often futile CPR care given to patients infected with common diseases such as HIV and Hepatitis, and a personal telling of the potential moral distress from withholding care on a deserving patient, regardless of risk to providers.

While Fins’ arguments prove logically valid, and in his Hasting’s Center statement, he makes them with great deliberation, Altman’s article for The Times speaks very little about the fact that we often provide aggressive, full-court press care to high-risk, medically futile patients every day. These patients – like the Ebola patients Fins’ suggests would benefit little with CPR – often have little or no prognosis for recovering from CPR, an intervention that is sometimes misunderstood by patients.  National facts mirror our overtreatment and misinterpretation of CPR at end of life – even though 80% of people with chronic illness say they’d rather avoid the hospital when dying, half of Americans breathe their last breaths as inpatients, undergoing care that is often not intended for cure. Whether this daily care is futile or not, to broadly limit resuscitation based on a single diagnosis – Ebola – should not come without an interdisciplinary discussion of the realities of current practice, and the possibility for great ethical dilemma when singling out a diagnosis.

A nurse’s voice in this article might call attention to our history of embracing risk to care for populations with grave illness, but could also highlight the personal side of resuscitation care. To watch a patient die while believing that your care might prevent, or at least attempt to prevent death, is a narrative that cannot be left out from this discussion. A nurse might speak about health care providers’ inability to turn off our ingrained call to beneficence simply based on diagnosis. And a nurse bioethicist should call attention to the extensive research that surrounds the subject of moral distress – knowing the right thing to do, and being kept from doing it – and the benefits of moral courage, especially in situations of high risk.

Barring providers from performing CPR may protect from the danger of Ebola infection, but it could expose us to the trauma of withholding care. As active participants in CPR care, a nurse voice is needed here – to solve the dilemma of Ebola care, but also to champion the critical conversation about our daily interactions with risk and futility.

She died shortly after we found her breathing tube and filled it with our own plastic substitute. Blood on her face, on her neck, on the bed. Dark blood, like molasses spilled. Her mother told us to quit the physical work of the code, her sister told us to leave the tube in her mouth, and her father told us they’d wait for her heart to slow and stop itself. We had paused the inevitable, we had worked, we had fought – all of us leaving, stained from the inside, out. Passing a bottle of hydrogen peroxide between us, our minds stayed close to the heart of her life, far from our cleansing ritual.

Unseen Gap in Health Care Access

Kamil Fulwood Spagnoli

Kamil Fulwood Spagnoli

This post is written by Kamil Fulwood Spagnoli, a new Graduate Fellow at the Center for Health, Media & Policy. Ms. Fullwood Spagnoli is working towards her MS degree in Health Communications at Boston University. She plans to focus her health communication work on people living with disabilities and maternal child health.  Her full bio is here.

Unseen Gap in Health Care Access

Over the past decade, there has been debate over how to provide increased access to health care. We all heard the fanfare about the Affordable Care Act and the national conversation that explored its benefits and shortcomings. This law has made it easier for people with preexisting conditions to receive coverage and has allowed Americans to purchase insurance through federal and state exchanges. 

The intent of the Affordable Care Act was to move toward universal access but the disabled still face being excluded from the health care system. There was much vitriol and acrimony during the debate about health care reform. Opponents of the proposed changes countered each proposal with arguments why the reforms would be destructive. In other words, there was a robust discussion. 

Exclusion of the disabled was never among the opponents’ counter arguments. 

How the Disabled’s Access to Health Care is Dwindling

According to the US Census Bureau, 1 in 5 Americans has some form of a disability. In the 2012 National Health Interview Survey, 20.6 million Americans were identified as having vision loss. The survey also found that the visually impaired have access to technology at an alarmingly low rate.  Over 1.5 million people, 15 years of age and older with limitation in seeing, reported having access to the Internet. Almost 1 million said they use a computer regularly. Of those, about 196,000 people have a severe limitation in seeing and have access to the Internet. 

Unintended Effects of Efficiency 

Increasingly, health care is following the trend toward exclusive access through technology−from using electronic health records to scheduling appointments over the Internet. What these statistics show us is that as the industry adapts to business models that rely on the Internet to manage and deliver health care, the visually impaired may be excluded from readily available information about their illness, symptoms and treatment options and health prevention. 

A growing number of health care organizations are scheduling appointments, managing patient records, prescriptions, and disseminating health information through online platforms that are not required to be accessible to visually impaired patients. 

Accessibility Enforcement

For those blind patients lucky enough to have assistive technology, there is no mandate to make health sites compatible to disabled patients.

The World Wide Web Consortium (W3C) is an international community that is committed to making access to the web available to everyone. W3C’s Web Accessibility Initiative provides strategies, guidelines and resources on how to make the web accessible to people with disabilities.  For non-governmental website developers these standards are voluntary and therefore not enforceable.

That’s why when a visually impaired person purchases a computer with assistive technology and she clicks on one of those websites it’s not compatible with their screen reader and magnifier and not accessible.

Non-disabled people have direct access to these same websites. They are at an advantage and can access comprehensive health care information and services, financial services, educational platforms and social networks.

The disparity that this problem creates is the huge gap between those who can see and those who cannot in regard to managing the basic tasks of everyday life.

Social and Economic Marginalization Carries On

It can be argued that the isolation experienced by the blind and visually impaired is more entrenched than racial segregation.  There has never been a high profile movement to demand solutions to the poverty and discrimination that people living with a disability experience daily. 

Large numbers of the disabled live at or near the poverty line and can’t afford the available assistive technology. Computer systems that include screen readers, can cost upwards of $10,000.  Not all visually impaired individuals are eligible to receive purchasing assistance from state vocational rehabilitation departments.  

Increasing internet-based access to the most fundamental services would certainly facilitate a demographic shift, economically, educationally and potentially impacting health outcomes.  

Making the Internet Accessible

One solution might be to offer tax credits as an incentive  to tech manufactures to integrate assistive technology into off the shelf computer systems. This incentive would increase access to technology for the visually impaired.

As a society, we may be forced to address the disparities created by  a failure to ensure access to online services because of the increasing prevalence of disabilities attributed to the aging population in the United States. The question is how do we successfully design health care strategies that are accessibly to all, not just the advantaged?

 

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